Your DNA, Your Say
Большинство людей не готово cдавать свою ДНК для исследований
Full article, as translated by Google Translate:
The international project “Your DNA, Your Say” showed that about one in two people agree to provide their genetic information for analysis by doctors, but people are much less willing to share it with scientists.
An international group of scientists has published the results of a large-scale project to study public opinion regarding the collection of DNA from citizens. According to data from 22 countries around the world, most people do not want to share their genetic material.
The project "Your DNA, Your Say" was organized and implemented by researchers from different countries in the framework of the Global Alliance for Genomics and Health (GA4GH). The data were obtained using an online cross-sectional survey of participants collected by the research company Dynata around the world, with a few exceptions: in Japan, the recruitment of participants was carried out by Cross Marketing, and in Pakistan and India by Foresight and Maction, with the methods have been adjusted for poor internet access.
The online questionnaire contained 29 questions. Specifically, participants were asked to indicate whether they would be willing to entrust their DNA or health information to “my doctor,” “any doctor in my country,” “any scientist from a budget institution in my country,” “any researcher from a commercial company,” and “representatives authorities ". There were three possible answers: “On the whole, I would trust”, “Not sure” and “Wouldn't trust”.
The analysis examined associations with three predictors: understanding the basics of genetics, views on DNA and medical information, and trust in the organization to which the data is provided. The results were adjusted for socio-demographic variables (age, gender, presence of children, higher education and religiosity).
The researchers clarify that the very notion of anonymity needs comment when it comes to DNA. When collecting data, the scientists deleted personal information of survey participants, personal identifiers such as name and date of birth. However, human DNA is unique, which means that the results of the genome analysis themselves can be used to identify a person. Nevertheless, instead of the term “de-identification”, the term “anonymity”, which was more understandable to survey participants, was used.
The final sample included data from 36268 participants from 22 countries: Argentina (919), Australia (1212), Belgium (544), Brazil (1349), Canada (2966), China (3008), Egypt (1427), France (790 ), Germany (1193), India (482), Italy (1229), Japan (4748), Mexico (1347), Pakistan (925), Poland (2904), Portugal (2224), Russia (1075), Spain (1272 ), Sweden (821), Switzerland (333), Great Britain (3 407) and the United States of America (2093).
According to the obtained data, more than half of the survey participants did not want or were not sure that they could provide scientists with their DNA and medical information, even on condition of anonymity. At the same time, the majority of respondents (52%) were ready to share their DNA with doctors, but only a third with scientists from commercial research institutions. More willingly agreed to provide DNA for non-commercial research.
Only 35.8% of survey participants had an idea of the basics of genetics (or personal experience of acquaintance with genetic diseases - their own disease or relatives', working with such patients). Such people were more likely to be willing to submit their DNA for research.
Overall, just over half (53%) believe that DNA analysis data is different from other types of medical information, but different views prevail in different countries. Thus, in Mexico and Italy, 65% of survey participants believed that DNA is a special category of medical data, while in Russia only 31% of respondents held a similar point of view. But the idea of the exclusivity of DNA as a kind of information about a person did not affect the willingness of citizens to share it for research.
So, the key factor when deciding to donate a DNA sample is trust in certain structures. The population trusts doctors and non-profit organizations more. The second important factor is the availability of knowledge in the field of genetics. These results indicate the need to conduct educational work among the population and increase the level of citizens' confidence in the structures involved in DNA research.
Nesterova Y, 2020. Most people are not ready to donate their DNA for research. PCR News [online]. 21st September. Available from: https://pcr.news/novosti/bolshinstvo-lyudey-ne-gotovo-cdavat-svoyu-dnk-d... [Accessed: 27 October 2020]